Abstract
Recent clinical experiences led the authors to believe that there was widespread unfamiliarity and scepticism about dissociative disorders on the part of many Australian clinicians and that this unfamiliarity and scepticism may be having adverse impacts on patients with these disorders. Although no relevant Australian studies had been carried out, a literature search showed widespread clinician resistance to the acceptance of the validity of the diagnosis of dissociative disorders, particularly dissociative identity disorder. Pope et al. [1] in a study of the attitudes of 367 American psychiatrists found that only a quarter felt the diagnoses were supported by strong scientific validity although another 47% thought them partially supported. Mai [2] found that 27% of a group of Canadian psychiatrists did not accept the validity of the diagnosis of dissociative identity disorder. Dorahy and Lewis [3] described similar findings in relation to dissociative identity disorder in Northern Ireland as did Somer [4] in Israel in relation to dissociative disorders.
The Australian Bureau of Statistics (ABS) study of the mental health and wellbeing profile of adults [5] did not report dissociative disorders as a category for study, implying that Australian clinicians did not think they were disorders of importance.
The following clinical case illustrates some of the reasons for the authors' concerns.
A 40-year-old woman was admitted to a Melbourne private psychiatric hospital with a diagnosis of severe depression. She reported constant auditory hallucinations consisting of voices of what she believed were demons constantly denigrating her and urging suicide. She regularly awoke to find messages such as ‘Evil’ or ‘Die!’ carved into her flesh, her bedclothes spattered with her blood and no memory of how it had happened. Agreeing she was evil, she isolated herself from others for the fear of contaminating them.
She had experienced similar symptoms for over 20 years. During that time she had variously been diagnosed as, and treated for, one or another of the mood disorders, or schizophrenia. Her treatments had included many long hospital admissions, a number of courses of electroconvulsive therapy (ECT) and most of the available antidepressants and antipsychotics including clozapine. Despite treatment, which had caused many sideeffects, she had remained very disabled, symptomatic, depressed and suicidal.
She gave a long history of memory gaps and absences and inexplicable behaviours, for example, the purchase of clothing or other articles not to her taste or for which she had no use. She had been told by friends and family that she had acted in radically different ways at different times and in different settings. She also described hearing a range of quite benign and often helpful ‘hallucinatory’ voices in addition to those of the ‘demons’. These benign voices would at times give her useful information such as telling her the whereabouts of lost articles, which she then found hidden in unexpected places.
At different times she was observed to present in very different states. At one time she was despairing and depressed, at another child-like and regressed, at another cool, controlled and poised. Once she presented a letter written in a child's hand-writing and signed by a name different from hers. It emerged that she had a number of different identity states of different ages and stages of development, capable of functioning independently of each other and with varying appreciation of each others' existences.
She had a background of severe childhood physical, emotional and sexual abuse and neglect.
The author made a clinical diagnosis of long-standing dissociative identity disorder on the basis of her meeting the four diagnostic criteria of DSM-IV [6] for this disorder as well as scoring 61 on the Dissociative Experiences Scale (DES) [7], a screening instrument for the presence of dissociative symptoms. It seemed likely this disorder had been present but undiagnosed and unaddressed through the 20 years of her treatment, to her cost.
On the basis of clinical impressions from cases such as that described and the literature review, the authors set out to conduct a pilot study to explore the attitudes and experience of Australian clinicians to the dissociative disorders, the impact of clinician attitudes on people with dissociative disorders and, at the same time, to enquire about the impacts of the disorders themselves on those affected. The authors predicted that Australian clinicians would have diverse attitudes to dissociative disorders which would impact on patients' paths to diagnosis and treatment and that the disorders themselves would cause considerable impairment and disability, and be associated with significant use of health services.
Method
The authors developed two questionnaires, both available from the principal author via email upon request. First, the ‘Clinician's Questionnaire re Dissociative Disorders’, is a self-administered, 60-item questionnaire which, after seeking professional and demographic data, asks about the clinician's experience and attitudes to six dissociative disorders. The first five dissociative disorders are those listed in DSM-IV, namely dissociative amnesia, dissociative fugue, dissociative identity disorder, depersonalization disorder and dissociative disorder not otherwise specified. Dissociative trance disorder listed in DSM-IV under ‘Criteria Sets and Axes Provided for Further Study’ was also included.
Approximately 250 questionnaires were circulated to mental health clinicians working in the public and private sectors in Victoria and a group of general medical practitioners. The questionnaire was also circulated on an Internet discussion group for Australasian psychiatrists (
The second questionnaire, also of 60 items, the ‘Questionnaire for People with Dissociative Disorders’, obtained data from patients on clinicians' and self-diagnoses, associated psychiatric, physical and social problems, the impact of their disorders, their paths to diagnosis, their treatment and the attitudes of clinicians toward them and their diagnosis. All completed the DES.
The questionnaire was distributed by their clinicians to approximately 60 people, currently in treatment, whom they judged to satisfy DSM-IV criteria for one or more of the dissociative disorders. Ten of the 11 clinicians, invited to be involved, returned questionnaires from at least one patient.
Informed consent was obtained from all participants. The protocol for the project was reviewed and approved by the Human Research and Ethics Committees of Melbourne's North Western Area Mental Health Service.
Results
Of the clinician questionnaires distributed, 139 of the 250 (57%) were returned while 12 questionnaires were completed and returned by means of the Internet group. Of the questionnaires for people with dissociative disorder, 56 (92%)were returned, 55 ofwhich had sufficient information to be processed for this study.
Of the clinician sample, 40% were psychiatrists, 22% psychiatrist trainees, 16% psychiatric nurses, 13% general medical practitioners, 6% psychologists, 1% trainee psychologists and 4% socialworkers. The male-to-female ratio was 3:2; 13% were in the age ranges 21–30 years, 29% were 31–40 years, 31% were 41–50 years and 27% were 51 years or older while, in regard to clinical experience, 22% had <5 years and 27% had <20 years experience. Ninety-three per cent came from Victoria and 7% from other Australian states. Most (94%) worked in the city, 6% rural; 41% worked mainly in the public sector, 58% in the private sector and 1% in the clinical academic sector.
Clinician experience with dissociative disorders is reported in Table 1. Attitudes to the validity of these disorders are shown in Table 2.
Clinician experience with dissociative disorders (n=250)
Clinician attitudes to validity of dissociative disorders (n=250)
Eighty-three per cent of clinicians thought that there may be alternative explanations for the symptoms of dissociative disorders, which included underlying psychoses, organic disorders such as epilepsy, or the effects of drug intoxication, factitious disorder, malingering, iatrogenesis and borderline personality disorder.
The clinicians returning patient questionnaires included seven psychiatrists, a nurse therapist, a medical practitioner and a psychologist. The mean age of the patients was 42 years and 89% were female. Regarding employment 18% were full-time, 27% part-time, 20% ‘home duties’, 45% reported significant employment problems while 38% were in receipt of social security.
In regard to education, 24% had completed secondary education and 11% had not; 20% had commenced but not completed tertiary studies and 45% had completed tertiary education. Self-diagnosis and clinician diagnosis are shown in Table 3. Most patients (87%) stated that their disorders had been present <10 years and 71% <20 years.
Diagnoses reported by patients (n=55) and their clinicians
Impairment <50% was reported by 68% of patients with at least moderately adverse impacts on education (70%), general relationships (70%), sexual relationships (90%) and general enjoyment of life (100%); 60% had never been parents and, of those who had, 66% felt their disorders had impacted adversely on parenting. A majority (72%) nonetheless stated that aspects of their disorder could be helpful at times.
In regard to comorbidity, all reported depression rated by 96% as moderate or severe, 93% panic attacks, 53% moderate or severe, 75% eating or weight problems, 13% bulimia, 18% anorexia nervosa and 27% vomiting to control weight. Some 68% reported self-harm, frequent in 43% (more than six episodes in the last 5 years), 69% reported suicide attempts with more than five attempts in 26%. Some 22% stated they had abused prescription drugs at sometime, 11% alcohol and 13% illicit drugs.
In regard to their physical health, 44% said they were often or usually not well and only 15% stated that they did not suffer from any one of eight common physical problems listed. Of these problems, 51% said they suffered from migraine, 44% frequent indigestion, 42% frequent diarrhoea, 20% episodic loss of function such as power, sensation, hearing, speech or vision, 15% arthritis and 5% heart disease.
The patients' paths to diagnosis and treatment were varied. Only 11% were diagnosed by the first clinician they consulted and 35% had seen six or more clinicians before a diagnosis was made. In 25% of patients the delay before diagnosis was in excess of 10 years and in 57% it was in excess of 3 years. Seventy-five per cent believed that they had been sometimes or frequently misdiagnosed. The majority (64%) felt that this delay had caused at least moderately adverse consequences. Only 24% did not experience any problems with delay.
Some 80% said they had experienced sceptical or antagonistic attitudes toward them from clinicians; 48% rated clinician attitudes to them as having been destructive. Only 25% rated the treatment they had received as most appropriate to their needs. Many (47%) had at one time been resistant to a diagnosis of dissociative disorder and had tried to keep it hidden.
Hospitalization had been part of the treatment experience of 48% of whom 14% had been hospitalized 1–2 times, 18% 3–4 times and 68% <5 times. Hospitalization was rated as useful by 59% while 30% had found it neither useful nor helpful, and 11% had found it a negative experience.
Most (96%) reported treatment at sometime with pychotropic medication and of these 91% had been given antidepressants, 71% benzodiazepines, 65% antipsychotics and 36% mood stabilizers. Approximately 60% found the antidepressants, antipsychotics and benzodiazepines to have been useful, 10–15% described negative effects and the remainder found them neither useful nor harmful. Only 10% found the mood stabilizers useful while 30% thought they had negative effects and 60% felt they were neither useful nor harmful.
Electroconvulsive therapy (ECT) had been given to 25% of the patients of whom 28% had found it helpful, 43% harmful and 29% neither helpful nor harmful.
Individual psychotherapy had been given to 95% of patients with such psychotherapy defined as at least one session a week for at least half an hour and for at least 6 months. None rated it negatively and all except one rated it as helpful. There were a few negative reports as well as positive ones of other therapies such as group therapy, cognitive behaviour therapy, Eye Movement Desensitization Reprocessing (EMDR) and skills training. The respondents reported seeing an average of six therapists in the course of their treatment.
Social and community treatments experienced included self-help groups (58%), alternative practitioners (49%) and spiritual help (60%). About half reported positive experiences and half, negative or neutral.
Patients commented negatively on the difficulties they had experienced in getting appropriate diagnosis and treatment before their current, usually positively rated treatment.
All respondents completed the DES. The mean score was 37 (range: 0–68). Some of the lower scores came from patients who had been in treatment for some time and who stated they had improved considerably.
Discussion
This study shows that many Australian clinicians, like their colleagues in other countries, display considerable scepticism toward dissociative disorders. On average, for all the disorders, only a bare majority (55%), believe them to be valid, 35% are dubious and 10% think they are invalid. Only 44% think dissociative identity disorder and 34% think dissociative trance disorder valid. There were no obvious differences in the attitudes related to discipline, gender or age.
The finding of this study, that clinician scepticism is widespread, finds support in other studies. A number of authors suggest dissociative disorders are artefacts of therapy, for example, produced by the recovery of false trauma memories [8], errors in therapy such as the misuse of hypnosis [9], the urge to avoid legal responsibility on the part of patients [10], environmental influences, media publicity and the clinician's belief system [2], [11]. Selzer [12] questions the very basis of the disorders stating that they were ‘a result of iatrogenicity in many if not all cases’. Weissberg [13] similarly stresses iatrogenesis as an explanation for dissociative disorders while Labbott and Wallach [14] draw attention to the possibility of malingering in dissociative identity disorder. Dell [15] notes such attitudes having negative effects, describing ‘contemptuous ridicule and deliberate interference in the medical care of patients’.
Are clinicians right to be sceptical? Of course it is possible and indeed documented that some presentations of dissociative disorders are iatrogenic and that some are malingered. The same can be said for all medical and psychiatric disorders. The authors believe that the patient section of this study provides some evidence against the proposition that this is common or usual for dissociative disorders.
Patients came to their diagnoses reluctantly with half stating that they had been resistant to their diagnosis and most expressing embarrassment and secrecy about their symptoms. None had anything to gain from their very disabling disorders which, as their responses showed, had been associated with very deleterious effects. These features are not consistent with malingering.
The authors believe the diagnoses made were valid. The study is open to criticism for not using rating scales such as the Structured Clinical Interview for DSM-IV Dissociative Disorders (SCID-D) a semistructured interview for the diagnosis of dissociative disorders based on DSM-IV criteria as recommended by Boon and Draijer [16]. However, clinicians used DSM-IV criteria and, as the patients were under their care, they had a longitudinal perspective on diagnosis. The patients too confirmed their diagnoses when, unusually for most studies, they were provided with the criteria and given an opportunity to comment.
There appeared to be no reason to think that the patients' presentations had been influenced by cultural or environmental influences. Most of the patient group were very puzzled and embarrassed by what was happening to 944 D. LEONARD, S. BRANN, J. TILLER them and at a loss to explain their often bizarre symptoms with which they had been living, usually for years, before the diagnosis of dissociative disorder was mentioned. In regard to iatrogenic factors, referring clinicians do not believe that they suggested symptoms to their patients.
Some clinicians suggested, appropriately, that alternative diagnoses such as borderline personality disorder, mood disorder or psychosis should be considered and could account for the presentations. Comorbidity for disorders which share a trauma background is common and diagnostic confusion may occur but, despite some overlap and similarities, dissociative disorders have their own specific and separate symptom constellations.
Against the proposition that these are not genuine disorders, a number of studies have confirmed the validity of the diagnostic criteria and shown their stability across a number of cultures [17–20] and, in their core symptoms, across time [21]. People with dissociative disorders consistently come from a background of often welldocumented severe trauma in their early lives [22], [23].
The clinical pictures of those with dissociative disorders and their trauma background are easy to recognize in the writings of Janet [24], his predecessors and contemporaries. This consistency of aetiology and clinical picture across cultures and time is strong evidence for the validity of the disorders. The clinician respondents felt that dissociative disorders were rare. Despite their being an experienced group, on average for any one of the disorders, 42% had never seen a case and 80% had seen fewer than six cases. Against this, a number of different studies suggest that dissociative disorders are not particularly rare, with estimates of a community-point prevalence of a pathological level of dissociation of 2–3% and a lifetime chance of developing a dissociative disorder of 2–11% [25], [26]. The prevalence of dissociative identity disorder in general populations has been estimated to be as high as 1–3% [27], but Ross states that the majority of these cases must be considerably less severe than those found clinically. At the same time he notes a high incidence of dissociative disorders in clinical populations, finding for example, the incidence of undiagnosed dissociative identity disorder in clinical populations was 4–6%. This high incidence of dissociative disorders in clinical populations has been confirmed in a number of studies. Horen et al. [28] in Canada found an incidence of 17% in an adult inpatient population including 6% with dissociative identity disorder. Tutkun et al. [29] in Turkey found an incidence of 10–14% and Gast et al. [30] found high levels of dissociation (22%) and a significant level of dissociative disorder (5%) in patients in a German inpatient unit. Friedl and Draijer [31] found dissociative disorders in 8% and dissociative identity disorder in 2% of a sample of Dutch inpatients. Friedl et al. [32] drew attention to the impact of diagnostic methodology in determining prevalence.
The studies from which these data are derived seem to have been carried out carefully and their results interpreted conservatively. If their findings generalize to Australian populations, it would appear that dissociative disorders are being underdiagnosed in Australia. This study supports the proposition that dissociative disorders are not uncommon in Australia as it was relatively easy to find 55 participants for our study from the practices of 10 clinicians, admittedly with a special interest in the field, practising in Melbourne, Australia, a city with approximately 4million inhabitants.
Clinician scepticism may be a major factor in underdiagnosis as diagnosis requires their first being considered in the differential. Displays of scepticism by clinicians, by discouraging openness in patients, already embarrassed by their symptoms, may also contribute to the problem.
Widespread clinician scepticism toward a group of diagnoses seems to be peculiar to dissociative disorders and remains unexplained. Neither lack of experience nor the bizarre nature of a fewpresentations explain scepticism as clinicians readily accept the existence of other disorders which they have not seen and do not generally dispute the existence of psychoses despite their unusual symptoms. Dramatic and unconvincing presentations may alienate clinicians and result in scepticism but people with dissociative disorders, far from seeking attention, are more often embarrassed and secretive about their symptoms and reluctant to reveal them. Finally, scepticism cannot be explained by the lack of an evidence-base. In regard to dissociative identity disorder, for instance, there are nowa number of excellent published series across cultures [17–20], showing a very acceptable coherence of aetiology, symptom picture, course and response to treatment.
Clinician scepticism and lack of experience may have contributed to the difficult paths to diagnosis the patients described in this study. Over half experienced delays <3 years from presentation to diagnosis and a quarter <10 years. This is consistent with other studies which show an average delay of between 6.8 and 11.9 years [33],[34],[20]. Middleton and Butler's study of 62 Australian patients [20] showed an average delay of 11.9 years. Many patients also believed that they experienced hostility and suspicion from clinicians and were often given treatment inappropriate to their condition.
Comorbidity was a striking finding of our study. Most of the patients were disabled and highly symptomatic with marked comorbidity, manifesting in high levels of severe depression, anxiety, eating disorders, suicide attempts, self-harm and substance abuse. Similar findings in relation to comorbidity were also noted in Middleton and Butler's Australian study [20]. Ross [35] calls for a new explanatory paradigm for trauma-associated disorders on the basis of such findings.
Accurate diagnosis of dissociative disorders is important as it leads to appropriate and effective treatment. Ross and Dua [36] have shown a considerable reduction in hospitalization, suicide attempts and costs in people after the diagnosis has been made and appropriate treatment initiated compared to the period before diagnosis. Although most clinicians recognize the great difficulties in treating severe dissociative disorders, Kluft [37] has described encouraging results, with 70% of 123 patients with dissociative identity disorder treated to stable integration in an average period of 21.6months.
In regard to treatment, patients in this study rated individual psychotherapy most highly but also valued pharmacological interventions, in particular, benzodiazepines, antidepressants and antipsychotics. Adjunctive use of antidepressants and anxiolytics has been reported elsewhere [38].
Conclusion
This study showed that, for Australian clinicians, the dissociative disorders remain a controversial area and attract considerable scepticism. The reason for this remains unclear. Most Australian clinicians make diagnoses of dissociative disorders infrequently and for the most part believe they rarely see such problems despite prevalence studies indicating that these are not uncommon disorders. Patients with dissociative disorders who responded to this questionnaire reported a number of difficulties with clinicians and considerable delays in diagnosis and appropriate treatment. Clinician scepticism seems to have contributed to these suboptimal experiences and is likely to continue to do so for new patients presenting. Considering the severity and indeed life-threatening nature of the problems described by this group of patients, it would seem to be desirable that Australian clinicians do include these diagnoses in their differentials and seek further training in the diagnosis and management of these serious disorders.
Footnotes
Acknowledgements
We thank patients and clinicians who gave their time to complete the questionnaires and Warwick Middleton for his very helpful comments on earlier drafts of this paper.